Re: Update on our daughter/Deb/Donelle

[Guest guest]

((Donelle))

Thanks hun I know I dont trust the cancer either believe me !!

How is Glenn? how about you?

Of course I will keep yall updated silly goose, I cant just runaway from my

family here, just cause Joe isnt doing chemo anymore.

As for Joe going back to work YEAH , HOWEVER we just got told that the

neurosurgeon thats suppose to do Dani's surgery doesnt except Joe's PPOM through

work , so although we were excited to get the insurance back for the kids ( they

had medicaid ) now we dont know what the heck we are gonna do about Dani's

surgery , as there are only 2 pediatric neurosurgeons in Michigan , one here in

Grand Rapids the other in Ann Arbor, (STANDING UP SHAKING FIST AND RANTING AND

RAVING)

ENOUGH is enough

Deb

Grandmommyandme@... wrote:

In a message dated 6/24/2005 1:51:47 PM Eastern Standard Time,

debbied31@... writes:

Well , I know I havent written much the last week or so,

Joe is doing GREAT back to work (45hours this week) and feels good except

for the neuropathy which we are hoping goes away soon !!

We took our 13yrold daughter Dani to the neurosurgeon on Wensday and he said

that the syrinx ( fluid like cyst in spinal canal) goes from C2 ALL the way

down to the bottom of spinal canal!!

He is 99% sure that the syrinx is caused by Chiari 1 malformation , so she

is going to get Chiari Decompression surgery on July 12th , she will be in the

hospital for 3-14 days depending on how she does.

There is a 90% chance that this will fix the syrinx , if it doesnt than she

will have to go back again and have surgery on her spine

She is naturally terrified to death , as would anyone ,

The doc of course had to mention worse cases scenarios , death , paralysis,

meningitis, brain damage.

But did he HAVE to do that in front of her??

I suppose he did but GEEZ

Not having surgery is not an option , as the syrinx can cause permanent

nerve damage, loss of bowel / bladder control/ and eventually paralysis.

The doc isnt sure if her nerve damage she has already ( numbness in

face/neck/shoulder/upperback) is reversible or permanent at this point.

So we will keep our fingers crossed AND I am going to ask him about B-6

Seems if B6 helps with the chemo neuropathy it may help with hers???

Thanks for listening

Deb

Ohhhhh, Deb.... I'm just now reading this post....so sorry Dani has to go

through this....you and Joe, too!!! My gosh, does it EVER END!!!??? They say

trials and tribulations builds character, but damn how much character do we

need???

No, I disagree... I think the dr. could have been more tactful and told you

and Joe, but not with Dani sitting right there. Did she really need to hear

that??? Sometimes drs. are just so insensitive. Grrr....

Soooo glad Joe is back to work and doing well....a real battle but worth

it...a real success story!!! Tell Joe he is now among the " good " statistics!!!

Still praying for him, tho....I don't trust Cancer at all!!!! Tell Dani we

are praying for her as well.... and you, too, Deb....the Mommy, the worrier,

the caregiver!!!

You will keep in touch, right?? Even if just a quickie to let us know how

Dani is doing?? I know you'll be stressed and tired when you get home from

hospital, but we'll be thinking about you!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

I swear you can't win for losing with this medical business. He should

have stayed off work for just long enough to get her surgery through

medicaid and then went back to work. Well raise hell with the insurance

company.. They should cover her surgery for pete's sake. You need to go

where Narice is and beat on something, thoough not each other

please...LOL Great big hugs JOlene

deb vamdembos wrote:

> ((Donelle))

> Thanks hun I know I dont trust the cancer either believe me !!

> How is Glenn? how about you?

> Of course I will keep yall updated silly goose, I cant just runaway

> from my family here, just cause Joe isnt doing chemo anymore.

> As for Joe going back to work YEAH , HOWEVER we just got told that

> the neurosurgeon thats suppose to do Dani's surgery doesnt except

> Joe's PPOM through work , so although we were excited to get the

> insurance back for the kids ( they had medicaid ) now we dont know

> what the heck we are gonna do about Dani's surgery , as there are only

> 2 pediatric neurosurgeons in Michigan , one here in Grand Rapids the

> other in Ann Arbor, (STANDING UP SHAKING FIST AND RANTING AND RAVING)

> ENOUGH is enough

>

> Deb

> Grandmommyandme@... wrote:

>

> In a message dated 6/24/2005 1:51:47 PM Eastern Standard Time,

> debbied31@... writes:

>

> Well , I know I havent written much the last week or so,

> Joe is doing GREAT back to work (45hours this week) and feels good

> except

> for the neuropathy which we are hoping goes away soon !!

>

> We took our 13yrold daughter Dani to the neurosurgeon on Wensday and

> he said

> that the syrinx ( fluid like cyst in spinal canal) goes from C2 ALL

> the way

> down to the bottom of spinal canal!!

> He is 99% sure that the syrinx is caused by Chiari 1 malformation ,

> so she

> is going to get Chiari Decompression surgery on July 12th , she will

> be in the

> hospital for 3-14 days depending on how she does.

> There is a 90% chance that this will fix the syrinx , if it doesnt

> than she

> will have to go back again and have surgery on her spine

> She is naturally terrified to death , as would anyone ,

> The doc of course had to mention worse cases scenarios , death ,

> paralysis,

> meningitis, brain damage.

> But did he HAVE to do that in front of her??

> I suppose he did but GEEZ

> Not having surgery is not an option , as the syrinx can cause permanent

> nerve damage, loss of bowel / bladder control/ and eventually paralysis.

> The doc isnt sure if her nerve damage she has already ( numbness in

> face/neck/shoulder/upperback) is reversible or permanent at this point.

> So we will keep our fingers crossed AND I am going to ask him about B-6

> Seems if B6 helps with the chemo neuropathy it may help with hers???

>

> Thanks for listening

> Deb

>

>

>

> Ohhhhh, Deb.... I'm just now reading this post....so sorry Dani has

> to go

> through this....you and Joe, too!!! My gosh, does it EVER END!!!???

> They say

> trials and tribulations builds character, but damn how much character

> do we

> need???

>

> No, I disagree... I think the dr. could have been more tactful and

> told you

> and Joe, but not with Dani sitting right there. Did she really need

> to hear

> that??? Sometimes drs. are just so insensitive. Grrr....

>

> Soooo glad Joe is back to work and doing well....a real battle but worth

> it...a real success story!!! Tell Joe he is now among the " good "

> statistics!!!

> Still praying for him, tho....I don't trust Cancer at all!!!! Tell

> Dani we

> are praying for her as well.... and you, too, Deb....the Mommy, the

> worrier,

> the caregiver!!!

>

> You will keep in touch, right?? Even if just a quickie to let us

> know how

> Dani is doing?? I know you'll be stressed and tired when you get

> home from

> hospital, but we'll be thinking about you!!!

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

>